For some of you this is going to sound crazy, for others you will understand perfectly, those nights that no matter what you do, what you take or even what you think, sleep just wont come. I am notorious for seeing the dawn in. It doesn't matter whether I am working or not. There have been many days I have gone into work having not slept since the day before. I can think of at least three job interviews I have attended sleep deprived for at least 40 hours.
I would love to blame this on my chronic conditions, because then I would have a cause and be able to treat it. But unfortunately I have been like it since a child, baby even. I never slept till late and normally I would have driven my poor mother to distraction refusing to go to sleep. There was one cure, my granddad playing his lute, despite all my resistance it would win. It usually also sent every one else to sleep as well. Its 14 years since he past and I miss him daily, and feel guilty I never paid attention to how he played the lute, thats still in its case as he left it.
It's funny really looking back the things as we get older. Things that mean the most to us, and the things we regret. In my case I wonder how much more I could have learnt, and why didn't I listen more. Neither of these things would take away the pain, well if 14 years haven't I doubt anything will, but I am still left with those regrets. Saying that there are memories I wouldn't change for the world.
Like the final music competition I entered, the one I wasn't meant to . I already had lost my hearing in my left ear and I was so ill I couldn't hear a thing I played. I mearly went there to accompany my granddad who was very frail by then with what was misdiagnosed as dementia, but was really sticky blood syndrome causing mini strokes Anyway I am getting side tracked, I showed up at the venue instrument in boot just to join in with the communal playing at the end, and no piece really prepared. I will quickly explain this is the world banjos mandolins and guitars, slight less formal than standard orchestral instruments but just as competitive. We get into the venture to find out I have been entered regardless the moment I walked in the door to do a solo on my banjolin . I had in the past held both this cup for musicianship and the alternative cup for technical difficulty that's held at another gathering. So streaming with a cold leaving me virtually deaf I have to get someone else to tune my instrument whilst I drive through my file of music hoping that one piece I was currently studying on the violin would convert. Then I did the craziest thing, I left Granddad in the audience and went into a hallway with only my mother and just did one run through then non stop scales and arpeggios to get my fingers moving. Nothing more, I was resigned to the fact this would be a disaster as I couldn't hear my own tuning, and was reliant on the frets as a guideline. When called I entered the hall piece of Schubert and banjolin in hand really wishing I could be in the audience rather than the final competitor in what I had heard was a cut throat competition. I started to play and even with my hearing being at its lowest I realised the hall and gone totally silent apart from my playing after the first 16 bars. I just carried on playing knowing that the only times that silence had happened before was when a person was either spectacularly wonderful or equally as bad. I actually never really heard the applause if I am honest what I saw and will always remember is the look on my granddads face, its said it all. I don't know to this day how I sounded, excepted from everyone elses feed back and the fact I won the cup, to be perfectly honest it didn't matter that look was worth so much more. All day he held that cup and I think it meant more to him than any other award or competition I ever won. It means even more to me because within 8 weeks he died, but he died knowing his grand daughter was a national champion in an instrument he taught me.
These memories always come back to me on these nights of insomnia, along with the mixture of bitter sweetness they carry. Saying that if I didn't have nights like this would I remember the little things that put the days pain into perspective. I achieved the impossible then when it meant so much to some one else, maybe that's what I need to do again. The joke in this house is I have more lives than my cats, literally cheating death 3 times that we remember and beating the odds more times than that. May be I am very lucky, or as other put it very stubborn, I personally think its because I am not done yet. I don't know what I am meant to do or finish yet, but all I know is every cheat came with a cost of responsibility, mainly to those around me who haven't given up even on my lowest of days. My lack of sleep is just another hiccup in my working, I haven't finished thinking and learning yet. I would rather suffer the endless nights because it means I see the dawn of the next day and what ever that holds.
Monday, 20 August 2012
Sunday, 19 August 2012
When its too hot for the duvet on a duvet day
How I wished I listened more in chemistry, instead of working out different ways to blow up the lab. I would have learnt more about cause and effect, a fundamental principle that dictates our lives as well as every action in the universe. Yesterday was my cause today is the affect, and in principle should be a duvet day.
I say should be resting under my duvet filling my mind with what ever information I can find on free view. However if you live anywhere in the south London area today you will know the wonderful summer we had yesterday has turned into an tropical climate, humid, heavy hot and damp. Come lunch time we even had the token thunder storm, which gave us humans a 30min breather from the humidity and my cats a quick bath of which they weren't best pleased. However within a hour the humidity is back as is the heat, so badly that just sitting on my bed i am sweltering, like every one else. This is nothing more than an inconvenience to the average person, for any one with CRPS it is hellish. For the dampness eats into your joints like a persistent wood pecker looking for its lunch, and is just as gentle. Fair enough I knew I would pay for yesterdays success, but this added pain is the killer. The effort involved in going to make a drink is the equivalent to that of a high end runner. and by the time I have made a drink I need another to replace the fluids I lost making the original one.
So I am going to spend the afternoon with the company of the Sunday papers and a dog who would prefer to be in several inches of snow than this. This is what brings me back to the cause and effect question. I have already glanced through the rags and can tell there is little in there I can call really news, but a lot of so called celebrities living their lives in the media. One weeks they are whining and dining the attention, the next they are screaming invasion of privacy, and whats worse it becomes news. Don't get me wrong I am not referring to the phone hacking cases, or anything like that, I am talking about these z Lister's or whatever they are who seem to fill the glossy magazines with every detail of their lives in case we may be interested with what they had for dinner etc. They create their own cause and then complain about the effect. In our house we have found the best home for this mundane drivel.. the bottom of the kitty litter tray, where it becomes recycled in a far more worth fashion.
The reason it bothers me is more the fact I spend an hour cutting through all the rubbish to find the news, like yesterday, in a tiny corner of a tabloids paper there was two paragraphs on a traveller girl who had not just achieved high grade a levels, but also secured herself a place at Oxford university. Now that kind of news could help remove peoples misconstructions on her social group in society, yet it was filed in the unimportant trivia on the side of a page, playing second best to some films stars break out or something just as unnecessary
Cause and effect seems to dominate our lives, what we choose to read, how we choose to eat, even our own mental attitude to any given situation. I, personally choose to write this blog in the hope that the effects and experiences in my live can give someone else some benefit. The other reason is, if I let the pain of my condition stop me from doing anything whether it be walk or write I am giving up on hope of some form of recovery.
But for now I have to accept that for the good days I have to pay with a bad day and that's what today is. Its just how bad so I allow it to be, do I just curl up in a heap and whimper? or do I do something vaguely constructive?.Personally I choose the latter, granted from the constraints of my beloved sofa bed, but today we wont bother with the duvet. Duvet days serve a purpose but they aren't meant to double as a turkish bath.
I say should be resting under my duvet filling my mind with what ever information I can find on free view. However if you live anywhere in the south London area today you will know the wonderful summer we had yesterday has turned into an tropical climate, humid, heavy hot and damp. Come lunch time we even had the token thunder storm, which gave us humans a 30min breather from the humidity and my cats a quick bath of which they weren't best pleased. However within a hour the humidity is back as is the heat, so badly that just sitting on my bed i am sweltering, like every one else. This is nothing more than an inconvenience to the average person, for any one with CRPS it is hellish. For the dampness eats into your joints like a persistent wood pecker looking for its lunch, and is just as gentle. Fair enough I knew I would pay for yesterdays success, but this added pain is the killer. The effort involved in going to make a drink is the equivalent to that of a high end runner. and by the time I have made a drink I need another to replace the fluids I lost making the original one.
So I am going to spend the afternoon with the company of the Sunday papers and a dog who would prefer to be in several inches of snow than this. This is what brings me back to the cause and effect question. I have already glanced through the rags and can tell there is little in there I can call really news, but a lot of so called celebrities living their lives in the media. One weeks they are whining and dining the attention, the next they are screaming invasion of privacy, and whats worse it becomes news. Don't get me wrong I am not referring to the phone hacking cases, or anything like that, I am talking about these z Lister's or whatever they are who seem to fill the glossy magazines with every detail of their lives in case we may be interested with what they had for dinner etc. They create their own cause and then complain about the effect. In our house we have found the best home for this mundane drivel.. the bottom of the kitty litter tray, where it becomes recycled in a far more worth fashion.
The reason it bothers me is more the fact I spend an hour cutting through all the rubbish to find the news, like yesterday, in a tiny corner of a tabloids paper there was two paragraphs on a traveller girl who had not just achieved high grade a levels, but also secured herself a place at Oxford university. Now that kind of news could help remove peoples misconstructions on her social group in society, yet it was filed in the unimportant trivia on the side of a page, playing second best to some films stars break out or something just as unnecessary
Cause and effect seems to dominate our lives, what we choose to read, how we choose to eat, even our own mental attitude to any given situation. I, personally choose to write this blog in the hope that the effects and experiences in my live can give someone else some benefit. The other reason is, if I let the pain of my condition stop me from doing anything whether it be walk or write I am giving up on hope of some form of recovery.
But for now I have to accept that for the good days I have to pay with a bad day and that's what today is. Its just how bad so I allow it to be, do I just curl up in a heap and whimper? or do I do something vaguely constructive?.Personally I choose the latter, granted from the constraints of my beloved sofa bed, but today we wont bother with the duvet. Duvet days serve a purpose but they aren't meant to double as a turkish bath.
Saturday, 18 August 2012
Lightly toasted ..meduim rare
So it seems we are having another attempt at a British summer. Having had a few days of damp, dank weather we are now impersonating the Costa brava. I am not about to complain about it, but it does not help with the pain control. As those who have taken any medication codeine or morphine based will tell you, your system is already fighting dehydration. So add in a sudden heat wave and you run the risk of suffering a bad case of dehydration.
With that in mind, most people in my situation would be sensible and take in consideration the medication factor mixed with the pain, and probably stay at home read a good book in the garden and take it easy. Yea right! this is me folks and I never make easy. Being vegetarian my need for fresh fruit and vegetables is more than the average person. Unfortunately, I don't about the rest of you but I find supermarket produce bland and doesn't keep fresh for more than a couple of days. This leaves us with few options as local greengrocers seem to be as scarce as honest banks. So as a family we either support local farm shops or make the trek to Croydon to a place called Surrey St. Basically a permanent market that is predominately fruit and vegs
This week we decided to make the most of the seasons bounty and head to Croydon. Normally this a job under taken by mum and I, being the cooks in the family we know what we need and so on. However a 70 year old parent and heatwaves don't mix at all. So the job of pack horse fell to husband dearest. Against every ones better judgement I was determined to go. So shopping list written that resembled an a to z of plant produce, we set off husband pulling trolley unsure what fate beheld him. The bus ride should have forwarded us we were heading into an oven as the sweat literally poured off me. Granted we had to stop several times on the walk to the bus stop and the walk towards the market.Half way up there it became obvious to us both one trolley and the shopping list weren't going to fit, fortunately there was a shop at hand to assist with this problem and armed with a trolley each we progressed through the list. Surrey Street is a a busy narrow street with more people than pavement, but its friendly and reminds me of the markets Dickens used to write about. Some how we managed to fill our trolleys with assorted fruit vegetable and salad and I didn't get pushed or knocked once. Husband also got to see an English market at its best, with the local community working together.
Once we replaced our fluid intake we made the decision to walk further to get us to the bus that would deliver us closer to home. For some reason I took on the challenge to pull one trolley and was doing really well despite the intense heat and pain in my back. That was until we tried to pass people at another bus stop. It was there I meet the most selfish and inconsiderate bunch of people ever. Not only did they occupy the entire pavement, they made no attempt to pause or give a little forcing me and trolley to topple on to the tram track. This did very little for either the shopping or my back. Did I get a sorry or offer to help, like hell I did. Now you would think, especially if you know the area, I would be talking about a group of hooded youths with their waist bands round their knees, but no this was a group of middle class mid life people who had an attitude of they were the boss.
Once Husband dearest had scraped me and trolley of shopping off the tram line before I got hit by a tram, we continued back to the bus garage, however the damage was done. Everything I had achieved in the last few days is now in danger of being ruined. Not to mention husband was left pulling two trolleys and trying to stop his wife from ending up in a crumpled heap/ All in heat more suited to the south of France rather than south London.
Needless to say we eventually made it home, having been slowly roasted in the bus, and having to phone Mum to come rescue me from my trolley at the home bus stop. I am now in a lot of pain but proud of my achievement, A week ago I couldn't face the walk to the corner shop or even the post
box at the end of road. I know tomorrow I will pay for this grand adventure, especially as my beloved phoenix decided the photo albums looked better being fired at my back rather than on the shelf they live on.
What it did show me was that the only way certain members of the general public will not give an allowance for any one with out a blatant label on them. Granted I did lose my temper a little and yell "what do I have to do wear a t shirt saying I am particularly deaf with a spinal condition" at the party that pushed me off the pavement. But in retrospect it does raise the question what will it take to make people aware of others needs. How many of us pre judge a person by just their physical appearance. I mean have you crossed the road because the person coming towards you looks like he is wearing more make up than a drag queen, and its sporting enough metal to justify a trip to the scrap metal yard. How many of us have tutted at a person in the disabled seat who doesn't appear to have a thing wrong with them. Most of us have done something, I know have made a flash judgement and been proved wrong. But I have also been the victim of people challenge my worthiness to claim a disabled seat on the bus. On more than one occasion i have been forced out of that seat and in some cases up to the higher deck, which is deadly for me now a days. The only reason it didn't happen today was the size and height of my husband deterred the normal barrage. In fact it has got so bad it is perfectly normal for me to return from a trip using public transport in tears either from pain or abuse. It has now become a running joke in my family that they are going to get a t shirt made for me reading
"I have hearing loss, and a fracture in my spine...whats your excuse!"
Unfortunately this joke is actually becoming dangerously close to necessity. For some reason when ever its said though, it leaves me thinking back to the Jews in Nazi Germany having to wear the star of David. Now I am not comparing myself to them, but I am thinking the prejudice still remains. It has simply changed form and become more accepted in its hidden form,
I will calm down tomorrow, and like the sun burnt face and shoulders I have acquired , the soreness of the day will fade, to nothing but mild irritation. For now though I am already thinking about how today's events will cause me to slow up tomorrow, and suddenly that good book in the shade seems such a good idea. So now I am going to hunt on line for a literary treat and resist the heat of tomorrow. I only do light toasting and I am already resembling a medium rare steak.
With that in mind, most people in my situation would be sensible and take in consideration the medication factor mixed with the pain, and probably stay at home read a good book in the garden and take it easy. Yea right! this is me folks and I never make easy. Being vegetarian my need for fresh fruit and vegetables is more than the average person. Unfortunately, I don't about the rest of you but I find supermarket produce bland and doesn't keep fresh for more than a couple of days. This leaves us with few options as local greengrocers seem to be as scarce as honest banks. So as a family we either support local farm shops or make the trek to Croydon to a place called Surrey St. Basically a permanent market that is predominately fruit and vegs
This week we decided to make the most of the seasons bounty and head to Croydon. Normally this a job under taken by mum and I, being the cooks in the family we know what we need and so on. However a 70 year old parent and heatwaves don't mix at all. So the job of pack horse fell to husband dearest. Against every ones better judgement I was determined to go. So shopping list written that resembled an a to z of plant produce, we set off husband pulling trolley unsure what fate beheld him. The bus ride should have forwarded us we were heading into an oven as the sweat literally poured off me. Granted we had to stop several times on the walk to the bus stop and the walk towards the market.Half way up there it became obvious to us both one trolley and the shopping list weren't going to fit, fortunately there was a shop at hand to assist with this problem and armed with a trolley each we progressed through the list. Surrey Street is a a busy narrow street with more people than pavement, but its friendly and reminds me of the markets Dickens used to write about. Some how we managed to fill our trolleys with assorted fruit vegetable and salad and I didn't get pushed or knocked once. Husband also got to see an English market at its best, with the local community working together.
Once we replaced our fluid intake we made the decision to walk further to get us to the bus that would deliver us closer to home. For some reason I took on the challenge to pull one trolley and was doing really well despite the intense heat and pain in my back. That was until we tried to pass people at another bus stop. It was there I meet the most selfish and inconsiderate bunch of people ever. Not only did they occupy the entire pavement, they made no attempt to pause or give a little forcing me and trolley to topple on to the tram track. This did very little for either the shopping or my back. Did I get a sorry or offer to help, like hell I did. Now you would think, especially if you know the area, I would be talking about a group of hooded youths with their waist bands round their knees, but no this was a group of middle class mid life people who had an attitude of they were the boss.
Once Husband dearest had scraped me and trolley of shopping off the tram line before I got hit by a tram, we continued back to the bus garage, however the damage was done. Everything I had achieved in the last few days is now in danger of being ruined. Not to mention husband was left pulling two trolleys and trying to stop his wife from ending up in a crumpled heap/ All in heat more suited to the south of France rather than south London.
Needless to say we eventually made it home, having been slowly roasted in the bus, and having to phone Mum to come rescue me from my trolley at the home bus stop. I am now in a lot of pain but proud of my achievement, A week ago I couldn't face the walk to the corner shop or even the post
box at the end of road. I know tomorrow I will pay for this grand adventure, especially as my beloved phoenix decided the photo albums looked better being fired at my back rather than on the shelf they live on.
What it did show me was that the only way certain members of the general public will not give an allowance for any one with out a blatant label on them. Granted I did lose my temper a little and yell "what do I have to do wear a t shirt saying I am particularly deaf with a spinal condition" at the party that pushed me off the pavement. But in retrospect it does raise the question what will it take to make people aware of others needs. How many of us pre judge a person by just their physical appearance. I mean have you crossed the road because the person coming towards you looks like he is wearing more make up than a drag queen, and its sporting enough metal to justify a trip to the scrap metal yard. How many of us have tutted at a person in the disabled seat who doesn't appear to have a thing wrong with them. Most of us have done something, I know have made a flash judgement and been proved wrong. But I have also been the victim of people challenge my worthiness to claim a disabled seat on the bus. On more than one occasion i have been forced out of that seat and in some cases up to the higher deck, which is deadly for me now a days. The only reason it didn't happen today was the size and height of my husband deterred the normal barrage. In fact it has got so bad it is perfectly normal for me to return from a trip using public transport in tears either from pain or abuse. It has now become a running joke in my family that they are going to get a t shirt made for me reading
"I have hearing loss, and a fracture in my spine...whats your excuse!"
Unfortunately this joke is actually becoming dangerously close to necessity. For some reason when ever its said though, it leaves me thinking back to the Jews in Nazi Germany having to wear the star of David. Now I am not comparing myself to them, but I am thinking the prejudice still remains. It has simply changed form and become more accepted in its hidden form,
I will calm down tomorrow, and like the sun burnt face and shoulders I have acquired , the soreness of the day will fade, to nothing but mild irritation. For now though I am already thinking about how today's events will cause me to slow up tomorrow, and suddenly that good book in the shade seems such a good idea. So now I am going to hunt on line for a literary treat and resist the heat of tomorrow. I only do light toasting and I am already resembling a medium rare steak.
Friday, 17 August 2012
That little ray of sunlight
Today is the daylight to yesterdays cloud coverage, which is a good thing. Granted it started way too early for my body's liking but the amount achieved compensates for that. OK the jobs done are highly mundane by most peoples standards, but for me its a great leap forward.
It started with the baby of the family lil Cheyenne's trip to the vets. 8 weeks ago he took on a car and for some reason the car won. Anyway this lil cat beat the odds thanks to a kind driver who actually took responsibility for her actions, and took Cheyenne straight to vets who were able to treat him for the shock and injuries. When we got him home he had little movement in his right leg and no light response on his right eye. He really was a sorry little thing and the vet told us we had to face the fact he may be left half blind, with brain injury and could even need his right leg amputated. Fortunately God and Cheyenne had other thoughts on the matter. With in 24 hours 97% of his eyesight returned and after 8 weeks the vet agrees with me about 70% of the leg mobility is restored and he can use it wash and jump. Granted it will never be perfect and he still needs a little pain killer to ease it a couple of times a week, but he passed with flying colours. That's said it took 3 humans and a 1 dog to get the toad into the basket to get him there and then there was small matter of extracting him off the air con unit in the vets surgery when the vet asked him to walk round the room. I care to point out the air con unit was 7+ft off the floor.
So that was the start of the day, we have also had the issue of mums car MOT today and to be honest I seriously thought it was going to be beyond financial viability as it is as old in car years as its owner. But again we were plesantly surprised , apart from a battery that had been er battered and a brake that had seen better days the car lives and we aren't wincing too badly.
Then in my wisdom I voluntereed to do the shopping and get the cash out for the car. Armed with a husband come chauffeur we set off.. Now after all my complaining about people not giving the less abled any leway, what happens? Idiot husband had a brain freeze about how far and how fast I can move trying to park the car miles away from the shop. So after a little tantrum I got delievered to a closer location and started my errans. It was whilst in the bank I met a gentleman who was in a slightly worse state than me with his back. Being the nice gent he was he not only gave me hope with his own story.. yes we got chatting, hwe also said he looks forward to seeing me at the clinics as he believes will meet at some of them. To me that was the best part of the day, being able to share experiences and getting a posistive response from a stranger. For some reason even the very tiring trip round the shops felt a little easier and I no longer felt like I am the only person in this state.
This leads me to the joys of todays post I finally have a date for pain management clinic granted its a whole month away but I have finally got in and there is that glimmer of hope infront of me. Now I just have to get to through the next 31 days and maybe someone can ease this torture. I am not asking for a miricle and the pain to just go away but if they can dull it to a livable level I will be very thankful. That will aloow me to join the world of employment and so on, something I sorely miss.
So today I am basking in that rare thing sunlight in the british summer, hope everyone else is.
It started with the baby of the family lil Cheyenne's trip to the vets. 8 weeks ago he took on a car and for some reason the car won. Anyway this lil cat beat the odds thanks to a kind driver who actually took responsibility for her actions, and took Cheyenne straight to vets who were able to treat him for the shock and injuries. When we got him home he had little movement in his right leg and no light response on his right eye. He really was a sorry little thing and the vet told us we had to face the fact he may be left half blind, with brain injury and could even need his right leg amputated. Fortunately God and Cheyenne had other thoughts on the matter. With in 24 hours 97% of his eyesight returned and after 8 weeks the vet agrees with me about 70% of the leg mobility is restored and he can use it wash and jump. Granted it will never be perfect and he still needs a little pain killer to ease it a couple of times a week, but he passed with flying colours. That's said it took 3 humans and a 1 dog to get the toad into the basket to get him there and then there was small matter of extracting him off the air con unit in the vets surgery when the vet asked him to walk round the room. I care to point out the air con unit was 7+ft off the floor.
So that was the start of the day, we have also had the issue of mums car MOT today and to be honest I seriously thought it was going to be beyond financial viability as it is as old in car years as its owner. But again we were plesantly surprised , apart from a battery that had been er battered and a brake that had seen better days the car lives and we aren't wincing too badly.
Then in my wisdom I voluntereed to do the shopping and get the cash out for the car. Armed with a husband come chauffeur we set off.. Now after all my complaining about people not giving the less abled any leway, what happens? Idiot husband had a brain freeze about how far and how fast I can move trying to park the car miles away from the shop. So after a little tantrum I got delievered to a closer location and started my errans. It was whilst in the bank I met a gentleman who was in a slightly worse state than me with his back. Being the nice gent he was he not only gave me hope with his own story.. yes we got chatting, hwe also said he looks forward to seeing me at the clinics as he believes will meet at some of them. To me that was the best part of the day, being able to share experiences and getting a posistive response from a stranger. For some reason even the very tiring trip round the shops felt a little easier and I no longer felt like I am the only person in this state.
This leads me to the joys of todays post I finally have a date for pain management clinic granted its a whole month away but I have finally got in and there is that glimmer of hope infront of me. Now I just have to get to through the next 31 days and maybe someone can ease this torture. I am not asking for a miricle and the pain to just go away but if they can dull it to a livable level I will be very thankful. That will aloow me to join the world of employment and so on, something I sorely miss.
So today I am basking in that rare thing sunlight in the british summer, hope everyone else is.
Thursday, 16 August 2012
Duvet day part two
OK unusual for me to post so frequently but I have had thinking time. And to those that know me that is a dangerous thing.
What I have been pondering is the continual inequality in this country. I said in my previous post how I feel alienated because my conditions aren't blatantly obvious to those around me. But having read the small print of my para Olympic tickets and just heard the problems on the news I could scream. Here is the probably I have to take one or another tablet every 2-3 hours, for me to take these into the Olympic venue I am advised to get a doctors note to ensure I am OK to take them in. So one minor hiccup. But it also states that you can not take excessive amounts of food and no drink into the venue. In principle fine, until I heard about the queues at these places. So what is going to happen is I am going to have to aim to get to the venue at least an hour before I need to to join a queue to guarantee I have enough to drink for the afternoon to save endless queueing so I can take the right medication at the right time. I also have to make sure I have the right amount of snacks to match the number of tablets so I don't have to queue up for fish and chips at £8.50 a pop of which I can only eat the chips maybe as I am also a strict vegetarian due to allergy not choice. Or worse Mac Donald's where I can only manage a happy meal minus the meat patty.
You could say well it's your choice to go which it is, but this is a problem not just at this one event.but at all the major events if I want to go to something at the O2 or Earls Court it is exactly the same. Same if I want to go to the states to see the in-laws except there I have further issues of which medication is legally allowed in to the country. Oh and in America you try and find vegetarian food that's not deep fried or covered in artificial cheese.
Is this society's way of trying to curtail less able or sicker people into submission, to except we are 2nd rate and don't belong at these events. If so its about time we kicked back at this nanny state and told them exactly where to put this idea. I, personally am a highly educated, elequant and intelligent human being, who loves music, theatre and motor sport amongst other things and I have no intention of being told I cant do something because health and safety disapproves of my medication routine etc. Personally I cant stand the amount of holidays given to politicians or the way certain people can get priority over the majority to achieve tickets to events, but at the end of the day I cant do anything about that. What I can do is change the way people perceive me and treat people like me.
Duvet days... dangerous for the world but great for my brain
What I have been pondering is the continual inequality in this country. I said in my previous post how I feel alienated because my conditions aren't blatantly obvious to those around me. But having read the small print of my para Olympic tickets and just heard the problems on the news I could scream. Here is the probably I have to take one or another tablet every 2-3 hours, for me to take these into the Olympic venue I am advised to get a doctors note to ensure I am OK to take them in. So one minor hiccup. But it also states that you can not take excessive amounts of food and no drink into the venue. In principle fine, until I heard about the queues at these places. So what is going to happen is I am going to have to aim to get to the venue at least an hour before I need to to join a queue to guarantee I have enough to drink for the afternoon to save endless queueing so I can take the right medication at the right time. I also have to make sure I have the right amount of snacks to match the number of tablets so I don't have to queue up for fish and chips at £8.50 a pop of which I can only eat the chips maybe as I am also a strict vegetarian due to allergy not choice. Or worse Mac Donald's where I can only manage a happy meal minus the meat patty.
You could say well it's your choice to go which it is, but this is a problem not just at this one event.but at all the major events if I want to go to something at the O2 or Earls Court it is exactly the same. Same if I want to go to the states to see the in-laws except there I have further issues of which medication is legally allowed in to the country. Oh and in America you try and find vegetarian food that's not deep fried or covered in artificial cheese.
Is this society's way of trying to curtail less able or sicker people into submission, to except we are 2nd rate and don't belong at these events. If so its about time we kicked back at this nanny state and told them exactly where to put this idea. I, personally am a highly educated, elequant and intelligent human being, who loves music, theatre and motor sport amongst other things and I have no intention of being told I cant do something because health and safety disapproves of my medication routine etc. Personally I cant stand the amount of holidays given to politicians or the way certain people can get priority over the majority to achieve tickets to events, but at the end of the day I cant do anything about that. What I can do is change the way people perceive me and treat people like me.
Duvet days... dangerous for the world but great for my brain
Taking the rough with the smooth
There is no other way to put it, today is a bad day or as its known in this house a duvet day. I had plans of things to do but in reality they aren't going to happen except the deflea animals that will happen come hell or high water.
I am not saying this a miserable depressing post, but I thought it best to do the explanation early in the blog, just wasn't planning on it being quite this early but ah well that's life. My back condition is erratic to say the least Tuesday I could walk around and after an hour I looked almost normal, but today I can barely put my foot to the ground with out my hip or lower spine sending such pain through the muscles I am soon a crumpled heap on the floor or worse locked in spasm mid step. Yes this is extreme for a back condition, but this is were the CRPS comes forward and raises it ugly head.
CRPS is hard to explain unless you live with it, however today I will attempt to explain as I am really feeling it today. Pain is always relative to a person, hence I never understand when the medical profession asking you to rate the pain between 1-10. This is because one persons 3 is another persons 8 depending on how high their pain tolerance is. Personally I have been told in the past with my ear condition and even with my back I have had a high pain tolerance. When I broke both my wrists at the same time I would have said my pain level was about a 2 hence I managed to go around for two weeks with out realising I had broke them both. Since I have had CRPS pain is a constant in my life. The constant nagging pain in my back is nothing new I have always been able to block that out, but now I am constantly aware of it. But even that is livable. What is the hard part is the points in the day where there an acute pain in back that is so sharp and intense that the CRPS goes into over drive and instead of the pain being in one place it is everywhere at such a level you can not pin point the actual problem. When this happens in my case the whole back spasms and is so sensitive no one can touch it with out me screaming.
Basically what CRPS does is similar to spilling tea over a mother board of computer, it short circuits the pain in the nervous system. So one pain can trigger pain from any and everywhere. By pain I don't mean the reach for the paracetamol and everything is calm pain, I mean sharp shooting agonising pain that can cripple you. Yes to a degree you can grit your teeth and work through it, but that is a option only bearable for maybe a day and leaves a person totally drained. Sometimes drugs like codeine or in my case tramadol may work to dull the pain to a reasonable level, but bad attacks often require multiple drugs to ease the body into a calm state. I hasten to add that none of leaves a suffer pain free, but it dulls and relaxes the body to bearable level. In my case I am on tramadol, amitriptyline, gabapentine and standard pain relief like paracetamol on a daily routine. But on a day like this it will take something like diazepam tonight to force the body to totally relax so I can at least sleep through the pain,
OK that's the explanation now for the day. Because it is so restricted days like today have all plans re scheduled to make it work able. I am lucky, both mum and hubby have now realised it is not a case of don't want to, but more a case of physically unable to. Today it has taken me 10 Min's to go an make a cup of tea because physically standing and walking is such a strain that by the end of it I am beaded with sweat. Some jobs have been re listed for tomorrow, others I have done on the phone and hubby will then take the relevant bits to people as necessary. It is days like this I appreciate my animals as they seem to sense when there are problems and the majority of them will sympathise with me, probably to get extra cuddles. Of course a couple of them push their luck but that's the joy of animals, they are independent beings who at times cant be told. As I write my dog is keeping guard of me watching my every move. I always wonder how much he knows and understands, but something tells me that if i ever completely collapse he would make sure some one in the house knows about it.
Over the last few weeks I have been lucky bad days just meant I got to see the Olympics on TV and probably watched more sport in those days than ever in my life. In the these weeks between that and the para Olympics I am finding it hard to occupy my mind. I am a keen reader and to a degree writer although that is hard unless I type straight into the PC. Hence this blog, because the biggest soul destroyer is boredom. Ask any person who suffers from long time illness and they will tell you the worse thing is being bored and frustrated and what they can't do. This is the reason why I you will hear me talk about daily targets and long term targets, I refuse to let my brain turn to mush. I have already planned which new camera I wish to buy, and such like. Its like I already know what to ask people for as a 40th birthday present, and what I want to do for my god daughter Christmas present , prevented only by the lack of money so that means the main goal is to find a way of making money from my bed a legal way. The trouble with society is it isn't fixed up to accommodate the less able in their midst to work within their capacity. If you are very disabled or in an obvious way less advantaged, but if your disability is hidden or not blatantly obvious people don't care or accommodate you. Unfortunately for me people cant see deafness or a fracture in the spine unless I am having duvet day, so they don't understand the sick days so refuse to employ me. Hence my need to find a job where I can work even on a duvet day. So if any one has any ideas let me know, for the rest of the day I will be researching.
Duvet days.. they have their purpose
I am not saying this a miserable depressing post, but I thought it best to do the explanation early in the blog, just wasn't planning on it being quite this early but ah well that's life. My back condition is erratic to say the least Tuesday I could walk around and after an hour I looked almost normal, but today I can barely put my foot to the ground with out my hip or lower spine sending such pain through the muscles I am soon a crumpled heap on the floor or worse locked in spasm mid step. Yes this is extreme for a back condition, but this is were the CRPS comes forward and raises it ugly head.
CRPS is hard to explain unless you live with it, however today I will attempt to explain as I am really feeling it today. Pain is always relative to a person, hence I never understand when the medical profession asking you to rate the pain between 1-10. This is because one persons 3 is another persons 8 depending on how high their pain tolerance is. Personally I have been told in the past with my ear condition and even with my back I have had a high pain tolerance. When I broke both my wrists at the same time I would have said my pain level was about a 2 hence I managed to go around for two weeks with out realising I had broke them both. Since I have had CRPS pain is a constant in my life. The constant nagging pain in my back is nothing new I have always been able to block that out, but now I am constantly aware of it. But even that is livable. What is the hard part is the points in the day where there an acute pain in back that is so sharp and intense that the CRPS goes into over drive and instead of the pain being in one place it is everywhere at such a level you can not pin point the actual problem. When this happens in my case the whole back spasms and is so sensitive no one can touch it with out me screaming.
Basically what CRPS does is similar to spilling tea over a mother board of computer, it short circuits the pain in the nervous system. So one pain can trigger pain from any and everywhere. By pain I don't mean the reach for the paracetamol and everything is calm pain, I mean sharp shooting agonising pain that can cripple you. Yes to a degree you can grit your teeth and work through it, but that is a option only bearable for maybe a day and leaves a person totally drained. Sometimes drugs like codeine or in my case tramadol may work to dull the pain to a reasonable level, but bad attacks often require multiple drugs to ease the body into a calm state. I hasten to add that none of leaves a suffer pain free, but it dulls and relaxes the body to bearable level. In my case I am on tramadol, amitriptyline, gabapentine and standard pain relief like paracetamol on a daily routine. But on a day like this it will take something like diazepam tonight to force the body to totally relax so I can at least sleep through the pain,
OK that's the explanation now for the day. Because it is so restricted days like today have all plans re scheduled to make it work able. I am lucky, both mum and hubby have now realised it is not a case of don't want to, but more a case of physically unable to. Today it has taken me 10 Min's to go an make a cup of tea because physically standing and walking is such a strain that by the end of it I am beaded with sweat. Some jobs have been re listed for tomorrow, others I have done on the phone and hubby will then take the relevant bits to people as necessary. It is days like this I appreciate my animals as they seem to sense when there are problems and the majority of them will sympathise with me, probably to get extra cuddles. Of course a couple of them push their luck but that's the joy of animals, they are independent beings who at times cant be told. As I write my dog is keeping guard of me watching my every move. I always wonder how much he knows and understands, but something tells me that if i ever completely collapse he would make sure some one in the house knows about it.
Over the last few weeks I have been lucky bad days just meant I got to see the Olympics on TV and probably watched more sport in those days than ever in my life. In the these weeks between that and the para Olympics I am finding it hard to occupy my mind. I am a keen reader and to a degree writer although that is hard unless I type straight into the PC. Hence this blog, because the biggest soul destroyer is boredom. Ask any person who suffers from long time illness and they will tell you the worse thing is being bored and frustrated and what they can't do. This is the reason why I you will hear me talk about daily targets and long term targets, I refuse to let my brain turn to mush. I have already planned which new camera I wish to buy, and such like. Its like I already know what to ask people for as a 40th birthday present, and what I want to do for my god daughter Christmas present , prevented only by the lack of money so that means the main goal is to find a way of making money from my bed a legal way. The trouble with society is it isn't fixed up to accommodate the less able in their midst to work within their capacity. If you are very disabled or in an obvious way less advantaged, but if your disability is hidden or not blatantly obvious people don't care or accommodate you. Unfortunately for me people cant see deafness or a fracture in the spine unless I am having duvet day, so they don't understand the sick days so refuse to employ me. Hence my need to find a job where I can work even on a duvet day. So if any one has any ideas let me know, for the rest of the day I will be researching.
Duvet days.. they have their purpose
Wednesday, 15 August 2012
Finding the light at the end of a tunnel (Living with chronic illness)
I am really new to this so bare with me please. I want to write the reality of living not with one but three chronic illness's in and real but non depressive way.
So to start I will give you a brief summary, and I mean brief. My name is Sharon, or Roni if you know me cyberly (mainly cos I hate any other abbreviations of my name unless you have known me for years) I am on a fast track to 40 years of age something we can all celebrate later cyberly. I have had two chronic illness's since I was 18 a back injury from a badly constructed chair that fractured a vertebrae in my spine and Mastoiditus which is a progressive infection that eats through the bones in your ear ruining your hearing and if untreated kills you from septicaemia as it infects the blood surrounding your brain. In the last year due my clumsiness I broke my wrist for the 5th time in 10 years and due to incorrect plastering I have also gained CRPS stage one as my 3rd chronic illness. I have other minor conditions as you hear over the blogs but please excuse the dyslexia in advance.
Up to recently none of these conditions have done nothing too serious to my life but increase my sick leave and I have lived and worked as any other person in the community, if any thing I have lived harder and partied harder than most as I had more to prove. I lost my career in music due to hearing loss so I changed career, but i am still keen on the performing arts of any form. I am also a car nut as you will hear later and move heaven and earth to get to the events I want to go to.
I am a lucky bunny as I have a great set of friends who help me achieve a lot of my dreams and support me when the world comes crashing down around me, and but for them I would be a very miserable human being. To them I owe a lot of thanks. A few years ago I discovered the world of twitter whilst I was recovering from swine flu, since then I gained even more friends and so my life improved.
The thing with chronic illness is alot of the time you look and act normally so when it hits hard you crash and burn and it often comes as a shock to those around you and at the moment I am living though a major crash. My spinal injury has decided to celebrate my 40th early by completely relapsing to such an existent it is worse than the original break. This is leaving me in great pain and finding it almost impossible to walk on some days. That said I decided to take it head on despite the fact I am facing an uncertain future with it. So over the next few weeks I am off to the paraolympics to watch the horse riding. Sounds easy yes but seeing as it look me 30 mins to walk a 5 min walk yesterday this a big a challenge where failure is not a option Some how I will make to Greenwich by 12.30 and I will sit and watch a fantastic sport performed by people worse off than me. I am also just imformed in September I am off to a motor stunt show thanks to a friend who has never given up on me even when I have slowed her up cos I can barely walk at events.
This is what I hope to achieve through my blog, a diary of living with these illnesses whilst still trying to have a near normal life, hopefully the highs will balance out the lows. For every dusk there is a dawn and thats how I look at life. I am not saying I am happy 24/7 because I am not and doubt any one is really is but I want to show there is hope and future with these illnesses and there is no shame in saying yes I am ill... so what.
So to start I will give you a brief summary, and I mean brief. My name is Sharon, or Roni if you know me cyberly (mainly cos I hate any other abbreviations of my name unless you have known me for years) I am on a fast track to 40 years of age something we can all celebrate later cyberly. I have had two chronic illness's since I was 18 a back injury from a badly constructed chair that fractured a vertebrae in my spine and Mastoiditus which is a progressive infection that eats through the bones in your ear ruining your hearing and if untreated kills you from septicaemia as it infects the blood surrounding your brain. In the last year due my clumsiness I broke my wrist for the 5th time in 10 years and due to incorrect plastering I have also gained CRPS stage one as my 3rd chronic illness. I have other minor conditions as you hear over the blogs but please excuse the dyslexia in advance.
Up to recently none of these conditions have done nothing too serious to my life but increase my sick leave and I have lived and worked as any other person in the community, if any thing I have lived harder and partied harder than most as I had more to prove. I lost my career in music due to hearing loss so I changed career, but i am still keen on the performing arts of any form. I am also a car nut as you will hear later and move heaven and earth to get to the events I want to go to.
I am a lucky bunny as I have a great set of friends who help me achieve a lot of my dreams and support me when the world comes crashing down around me, and but for them I would be a very miserable human being. To them I owe a lot of thanks. A few years ago I discovered the world of twitter whilst I was recovering from swine flu, since then I gained even more friends and so my life improved.
The thing with chronic illness is alot of the time you look and act normally so when it hits hard you crash and burn and it often comes as a shock to those around you and at the moment I am living though a major crash. My spinal injury has decided to celebrate my 40th early by completely relapsing to such an existent it is worse than the original break. This is leaving me in great pain and finding it almost impossible to walk on some days. That said I decided to take it head on despite the fact I am facing an uncertain future with it. So over the next few weeks I am off to the paraolympics to watch the horse riding. Sounds easy yes but seeing as it look me 30 mins to walk a 5 min walk yesterday this a big a challenge where failure is not a option Some how I will make to Greenwich by 12.30 and I will sit and watch a fantastic sport performed by people worse off than me. I am also just imformed in September I am off to a motor stunt show thanks to a friend who has never given up on me even when I have slowed her up cos I can barely walk at events.
This is what I hope to achieve through my blog, a diary of living with these illnesses whilst still trying to have a near normal life, hopefully the highs will balance out the lows. For every dusk there is a dawn and thats how I look at life. I am not saying I am happy 24/7 because I am not and doubt any one is really is but I want to show there is hope and future with these illnesses and there is no shame in saying yes I am ill... so what.
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